Updated: Nov 17, 2021
To say my mother and I didn’t always see eye-to-eye when I was growing up would be a drastic understatement: we disagreed and fought over EVERYTHING. She dressed me in pink; I liked blue. She put bows in my hair every morning before school — I took them out once I got to my classroom. I wanted to play soccer; she wanted me to be a ballerina. I wanted Converse high-tops; she said “no way.” I was a tomboy who climbed trees and played with the boys, and my mother (one of three girls and having only daughters) wasn’t quite sure what to do with me. The only thing we appeared to have in common was an iron will which we both employed on a daily basis.
The funny thing is, we look identical. I’m fairly certain my mother thought to herself more than once, “How can this ‘little me’ be so different from me?” Indeed, I was a “little Susanne” in appearance, but the complete opposite in every other way.
Time heals, and by the time I reached middle school, I think both of us had given way on some things. She let me quit ballet and focus on my sports. I started asking her for clothing and makeup advice. By high school, we had become friends, and while we still disagreed on some things, I think both of us genuinely tried to see the world from the other’s perspective. But it wasn’t until 8 years later when I was diagnosed with multiple sclerosis that I truly saw and understood my mother’s life, her mindset, and the struggles she went through to raise my sisters and me.
My mother has had MS for nearly 50 years. She suffered her first attack in 1974. In 1974, multiple sclerosis was relatively unheard of. She was 24 years old and in her first year of teaching. After the Christmas holidays, she lost vision in her right eye and was numb down the right side of her body. She contacted a neurologist who made an appointment for her right away. He was worried it was a brain tumor.
They spent a week doing tests, but there was no MRI machine in those days and no spinal tap test. The doctors mentioned something about multiple sclerosis, but it was such an unknown that nothing further was said or done.
It took 10 years before they could diagnose her. Those 10 years in my mother’s life marked a period of anxiety and darkness. She read what she could about MS and nothing was promising: an eventual loss of all function and a life expectancy of 4-5 years. She waited several years to start having children because she wasn’t sure if she’d live long enough to be able to raise them.
She continued to have attacks about twice a year, and she endured most of them without visiting a doctor — after all, what could the doctor do? Thankfully, none of the attacks left her with a permanent loss of function.
In 1985, Houston received its first MRI machine and my mother heard the words she’d anticipated for the last 10 years: “You have MS.” Although she could now put a name to her symptoms, little else could be done. There was no medication in 1984 for MS and still very little research.
She turned to the only thing she could control: her nutrition. She adopted the Swank Diet, and for the next 25-30 years, she consumed less than 10g of saturated fat per day. She never ate red meat, full-fat dairy, fast food, or desserts. She consumed 1 tbsp of Arctic cod liver oil every morning — gulped down with a spoon and orange juice as the chaser.
Now that she was diagnosed, whenever she suffered a severe attack, she went to the hospital and for three days, her doctor infused a heavy dose of steroids into her body to stop the attack. That was the only treatment they had for MS in the 80’s and early 90’s.
Interestingly, my mother felt amazing when she was pregnant — no fatigue, no attacks. In her early 40’s, she underwent a hysterectomy. After her hysterectomy, the attacks were fewer and far between. They were also less severe. Was her MS somehow connected to hormones? It seemed plausible, but at the same time, when Mom had her hysterectomy, I was a little older and becoming less of a pill in her life. Maybe it was a combination of the two.
As a mother of 3 girls, her greatest fear was passing the gene for MS on to her children. “It is not genetic,” her doctors reassured her. “There is no way you could give this to your children. You have nothing to worry about,” they told her over and over again.
But in 2006, when my mother was 56 and I was 26, I called to tell her I was having trouble seeing out of my eye. I had been to the optometrist and the ophthalmologist and neither doctor came to any conclusions. “Which eye?” she asked me. Puzzled at the question, I responded, “The right eye.” “So it’s not in both eyes? It’s just in one eye?” she asked. Yes, I said. “Are you numb on the right side of your body?” she asked. I thought about it. “Well, yes, actually,” I said, “a little bit.” I was still puzzled by her questions. How did she know I was numb on the right side? It was only in my right hand and arm, but still…how did she know? There was a pause in the conversation. “Ok, I’m coming to see you.” “What? Why? What’s the matter?” I asked. Another pause. “Well, I could be wrong and I hope I am, but I think you might have MS.”
I went to a neurologist and the MRI and spinal tap test confirmed the diagnosis. After a heavy dose of steroids, I regained my sight — not 100%, but about 85%. Not only did my mother and I experience the exact same symptom at almost the exact same age (she was 24, I was 26), even more ironic is what I was doing with my life: I, too, was in my first year of teaching.
God sure has a funny sense of humor sometimes.
One evening many years later when my mother and I were talking about our MS, she asked me how I was able to handle it when I was first diagnosed. “I had you,” I replied.
My diagnosis brought us closer together. I never understood when I was a kid everything she was going through. I didn’t understand why she had to take naps all the time or why she couldn’t drive my friends and me to the movies when she couldn’t feel her foot. I didn’t understand why the heat and humidity of the summer months caused her to lose vision out of her right eye, but a cold bath could bring the vision back. “I’m having an attack,” she called it. “An attack? Who’s attacking you? I don’t get it?” I often wondered as a kid.
Now that I was experiencing some of the same symptoms, I began to see and understand my mother’s condition. I began to understand the nature of this word “attack,” the fatigue and need for naps, and the sacrifices she made as a mother for my sisters and me.
As I became closer to my mother and learned more about how she handled her symptoms, I came to see her greatest quality: optimism. She never complained. I never once heard her say, “Oh, if only I didn’t have this disease…” I never once heard her angry or mad over the cards she was dealt. She’s a “glass-half-full“ kind of person, and I came to see how strong her spirit was. “Always count your blessings,” she would tell me. “Happiness is a choice. You have to choose how you see the world. If you’re angry all the time, it’s only going to make you feel bad. Being angry isn’t going to change anything. You have to look at the bright side of things.”
In literature, those who are literally blind are often the ones who have been blessed with the gift of true sight (wisdom and understanding). Think Tiresias, Oedipus, and the soothsayer from Shakespeare’s Julius Caesar. In a strange twist of events, I, too, found sight through blindness. My optic neuritis and MS diagnosis led me to see the world from my mother’s perspective. With my mother‘s guidance, I came to see my diagnosis as a blessing. Not only did it force me to confront some unhealthy habits and regain control of my health, but it’s helped me become a better person. I’ve developed a stronger sense of empathy for others, and most importantly, I’ve learned to see the world as my mother has always seen it: the glass is half full.
And while we may never see eye-to-eye on the little things, we see eye-to-eye on the most important things. And that’s all that matters.